The overall aim of this thesis on congenital clubfoot was to estimate the incidence with a national perspective, analyse residual deformities and their management, and evaluate patient reported long-term quality of life and foot function. Paper I was a prospective, nationwide sampling of 280 children with congenital clubfoot during 1995-96. The average incidence was 1.4‰. There was regional heterogeneity but no seasonal variation. Paper II evaluated ultrasonography on 54 newborn, prospectively followed up to 12 months of age. Significant increase of medial malleolus to navicular distance (MM-N-distance) and of soft tissue thickness with increasing age was seen and with acceptable reliability. Paper III assessed 35 children (47 feet) after previous posterior release, mean age of 4.5 years, and the MM-N-distance was shorter in unilateral clubfeet (21 patients) than in contralateral normal feet. No association between navicular position and forefoot adduction (FFA) was determined. Smaller FFA yielded better subjective and functional outcome. Paper IV reviewed distraction treatment with Ilizarov External Fixator in seven patients (10 feet), 6-15 years of age, with relapsed deformities. All patients, except one, reported satisfaction with the overall result but less stiffness was experienced in only 4/10 feet. Paper V evaluated self-estimated outcome in 83 patients (63 males, 20 females), mean age of 64 years, through SF-36 and EQ-5D, and through AAOS foot and ankle score. Age and gender adjusted norm groups were used. Female patients scored worse than male patients did. Both males and females reported negative influence on foot and ankle function. Conclusion: The incidence of congenital clubfoot in Sweden is higher than in previous Scandinavian studies. Ultrasonography is reliable for describing pathoanatomy of the talo-navicular joint in clubfeet and can detect "spurious" (false) correction. Distraction treatment with the Ilizarov External Fixator yields subjective improvement but stiffness remains. Long-term influence on daily life activities is limited to foot and ankle function for both genders, but only female patients report negative influence on physical aspects of quality of life.

Patient reported outcome (PRO) measurement of disability is integral to a patient-centered approach to health care and gauging the biopsychosocial impact of health conditions from the patient's perspective. This thesis investigates disability after proximal humerus, elbow and distal radius fractures; conditions that constitute a major burden in musculoskeletal health care and a substantial impact on health-related quality of life (HrQoL). Disability is defined by the World Health Organisation (WHO) International Classification of Disability, Functioning and Health (ICF) as ‘a multi-dimensional construct involving a dynamic interaction between impairment, activity limitations and participation restrictions, that are influenced by contextual factors'. This international, consensus-based framework acts as a guide for the application of outcome measures in performing scientific research. The WHO ICF also considers other patient perspectives on health and health care systems, including patient experience and patient activation within the contextual factors component. Patient experience encompasses aspects such as satisfaction, expectation management and confidence with care, and is measured using a variety of scales and questionnaires. Patient activation relates to 'the knowledge, skills and confidence a person has in managing their own health and health care'. This concept is quantified using patient activation measures (PAMs). The overarching goal of this thesis is to identify the most influential factors predicting disability after proximal humerus, elbow and distal radius fractures. This work also aimed to define the relationship between disability, experience and activation to inform the development of a patient-centred approach to managing these challenging injuries. The first systematic review highlights the dominance of psychosocial factors in influencing disability associated with a range of upper extremity conditions. Few studies have assessed this relationship in specific trauma populations. The second review underlines the paucity of upper extremity PRO measures incorporating fracture populations in their original development. It also reports the highly variable quality of initial studies introducing these measures. The final review demonstrates the superior measurement properties of computer adaptive tests (CATs), a contemporary form of PRO measurement, over fixed-scale instruments. Few studies apply CATs in trauma and few have been performed outside the U.S. These reviews collectively informed the selection of PRO measures for the experimental studies in this thesis. Firstly, a pilot study establishes a methodology for addressing the key objectives and the feasibility of using a web-based platform for measuring patient outcomes. Strong correlation between PROMIS Physical function CAT, a computer adaptive measure of physical function, and the Quick Disabilities of the Arm, Shoulder and Hand (QuickDASH), a region-specific, fixed scale is observed. The core experiment (n=734) expands upon this work and demonstrates correlations between a range of generic and region-specific measures in an upper extremity trauma population. Disability is shown to correlate with satisfaction, and the strength of this correlation increases over time. Applying PRO measures of disability in populations with shoulder, elbow and wrist fractures show that self-efficacy (i.e. coping ability) within 6 weeks of injury was the strongest predictor of medium-term disability at 6-9 months. In proximal humerus and elbow fractures, kinesiophobia (i.e. fear of movement) within a week of injury was also a strong predictor of disability. The final study concludes that greater patient activation is associated with greater health-related and experiential outcomes. However, psychosocial factors including self-efficacy, superseded activation in predicting disability and satisfaction. This thesis contributes evidence for musculoskeletal health care professionals (HCPs) to consider specific psychosocial factors, such as coping abilities, and patient activation early in the recovery process to improve disability following these injuries.

Objective: The primary aim of the study was to examine the automated linguistic analysis of the open-ended problem (PQ) and life-effects (LEQ) questionnaires to understand the psychological effects of tinnitus. Design: The study used a cross-sectional design. Participants completed online questionnaires which included demographic questions, several standardised patient-reported outcome measures (PROMs), and two open-ended questions focussing on PQ and LEQ related to tinnitus. The response to open-ended questions was analysed using the Linguistic Inquiry Word Count (LIWC) software to identify the frequency of text on various linguistic dimensions relevant to tinnitus. Study sample: 336 individuals with tinnitus. Results: The study results point to two broad findings. First, although PQ and LEQ have some similarities with PROMs (e.g. the linguistic dimension negative emotions having a weak positive correlation with anxiety and depression), no correlation with the number of dimensions suggests that the open-ended questions identify additional elements that are not captured in PROMs. Second, more linguistic dimensions from the PQ correlate with PROMs compared to LEQ suggesting that the current PROMs are problem-oriented. Conclusions: The study results support the idea that the use of open-ended questions in addition to PROMs may help optimise the efforts in examining the effects of chronic conditions such as tinnitus.

Context: Medical management for head and neck cancer (HNC) often includes neck dissection surgery, a side effect of which is shoulder dysfunction. There is no consensus for which patient-reported outcome measure (PRO) is most appropriate to quantify shoulder dysfunction in this population. Objective: The aims of this research study were to: (1) use Rasch methodologies to assess construct validity and overall appropriateness of test score interpretation of Disability of the Arm, Shoulder and Hand (DASH), QuickDASH, Shoulder Pain and Disability Index (SPADI) and Neck Dissection Impairment Index (NDII) in the HNC population; (2) determine appropriateness of use of University of Washington Quality of Life (UW-QoL) shoulder subscale as a screening tool for shoulder impairment; (3) recommend a new PRO, or combination of PROs, that more accurately portrays the construct of shoulder dysfunction in the HNC population. Design: One hundred and eight-two individuals who had received a neck dissection procedure within the past 2 weeks to 18 months completed the PROs. Rasch methodologies were utilized to address the primary aim of the study through consideration of scale dimensionality [principal components analysis, item and person fit, differential item functioning (DIF)], scale hierarchy (gaps/redundancies, floor/ceiling effects, coverage of ability levels), response scale structure, and reliability (person and item reliability and separation statistics). The secondary aim was addressed through correlational analysis of the UW-QoL (shoulder subscale), DASH, QuickDASH, SPADI and NDII. Results: The DASH did not meet criteria for unidimensionality, and was deemed inappropriate for utilization in this sample. The QuickDASH, SPADI and NDII were all determined to be unidimensional. All scales had varying issues with person and item misfit, DIF, coverage of ability levels, gaps/redundancies, and optimal rating scale requirements. The NDII meets most requirements. All measures were found to meet thresholds for person and item separation and reliability statistics. The third aim of this study was not addressed because the NDII was determined to be appropriate for this population. Conclusions: Rasch analysis indicates the NDII is the most appropriate measure studied for this population. The QuickDASH and SPADI are recommended with reservation. The DASH and the UW-QoL (shoulder subscale) are not recommended.

This thesis explored symptom clusters in patients with lung cancer before, during and after oncological treatment. A literature review and an interview study was used to explore the symptom cluster experience from the patients’ perspective. A large diversity of symptom cluster constellations were identified, in which fatigue was the most commonly occurring symptom, followed by dyspnea, pain, depression, cough and nutritional impact symptoms. Many symptom assessment instruments were identified, measuring mostly the intensity-dimension alone or in combination with timing. The results also stress that living with symptom clusters during treatment is more about survival than actually living. Patients’ symptom management strategies were shaped by impacting conditions such as knowledge and earlier experience of symptoms. Symptoms were often regarded as unavoidable by the patients and something to accept. How symptoms were recognized by health care professionals further added to the normalization of symptom clusters. Subsequently, patients would not always ask for support, and their quality of life was negatively affected. Holistic person-centered care including multi-dimensional symptom assessment is considered essential to ensure adequate symptom cluster management for patients with lung cancer.

The rate of Emergency Department (ED) visits due to mental health and drug abuse among children and youth has been increasing for more than a decade and is projected to become the leading cause of ED visits. Identifying high-risk patients well before an ED visit will enable mental health care providers to better predict ED resource utilization, improve their service, and ultimately reduce the risk of a future ED visit. Many studies in the literature utilized medical history to predict future hospitalization. However, in mental health care, the medical history of new patients is not always available from the first visit and it is crucial to identify high risk patients from the beginning as the rate of drop-out is very high in mental health treatment. In this study, a new approach of creating a text representation of questionnaire data for deep learning analysis is proposed. Employing this new text representation has enabled us to use transfer learning and develop a deep Natural Language Processing (NLP) model that estimates the possibility of 6-month ED visit among children and youth using mental health patient reported outcome measures (PROM). The proposed method achieved an Area Under Receiver Operating Characteristic Curve of 0.75 for classification of 6-month ED visit. In addition, a novel method was proposed to identify the words that carry the highest amount of information related to the outcome of the deep NLP models. This measurement of word information using Entropy Gain increases the explainability of the model by providing insight to the model attention. Finally, the results of this method were analyzed to explain how the deep NLP model achieved a high classification performance. / Dissertation / Master of Applied Science (MASc) / In this document, an Artificial Intelligence (AI) approach for predicting 6-month Emergency Department (ED) visits is proposed. In this approach, the questionnaires gathered from children and youth admitted to an outpatient or inpatient clinic are converted to a text representation called Textionnaire. Next, AI is utilized to analyze the Textionnaire and predict the possibility of a future ED visit. This method was successful in about 75% of the time. In addition to the AI solution, an explainability component is introduced to explain how the natural language processing algorithm identifies the high risk patients.

Background Monteggia fractures and Monteggia-like lesions result after severe trauma and have high complication rates. Preliminary biomechanical studies suggested a correlation between ulnar fracture localization and clinical result. Objectives Key objective was to evaluate whether the site of the ulnar fracture can be correlated to clinical outcome after open reduction and internal stabilization. Methods In a retrospective, monocentric study 35 patients who underwent surgical treatment after suffering a Monteggia injury or Monteggia-like lesion were included. Fractures were classified according to Bado and Jupiter, the site of the fracture location at the proximal ulna and regarding the potential accompanying ligamentary injury. In a follow-up examination validated patient-reported outcome measures and functional parameters were evaluated. Furthermore, treatment strategy and complications were analysed. Results Mean patient age was 51.9 years (± 18.0). 69% were females (n = 24). Follow-up took place after 50.5 months (± 22.1). Fractures were classified according to Bado (I:2, II:27, III:4, IV:2). Bado II-fractures were further classified according to Jupiter (A:7, B:16, C:3, D:1). Cases were divided into subgroups depending upon the distance of the ulnar fracture site in respect to its distal endpoint (A: < 7 cm and B: > 7 cm). Average overall MEPS was 84.1 (± 19.0). Oxford elbow score and DASH were 37.2 (± 10.5) and 20.4 (± 20.5). Average extension capability reached − 7° (± 7.5). Mean flexion was 134.8° (± 19.7). Average pain according to visual analogue scale was 1.6 (± 1.9). We found no differences between the subgroups regarding the PROMs. Subgroup A displayed a worse extension capability (p = 0.027) and patients were significantly older (p < 0.01). Comparing patients with and without fracture of the radial head, we observed no differences. Patients with an accompanying injury of the coronoid process displayed higher pain levels (p = 0.011), a worse functionality (p = 0.027) and overall lower scoring in PROM. Conclusion The presented results suggest that in Monteggia fractures and Monteggia-like lesions, the localization of the ulna fracture can give a hint for its postoperative outcome. However, we could not confirm the hypothesis of an increasing instability in ulnar fractures located further distally (high severity of the potential ligamentous injury). Intraarticular fractures or injuries with a close relation to the joint have a worse prognosis, especially if the coronoid process is injured. Trial registration Registration was done with ClinicalTrials.gov under NCT05325268.

I performed two randomised controlled trials (RCTs) to determine the best treatments for enteric fever in Kathmandu, Nepal, an area with a high proportion of nalidixic acid resistant S. Typhi and S. Paratyphi A isolates. I recruited 844 patients with suspected enteric fever to compare chloramphenicol versus gatifloxacin. 352 patients were culture confirmed. 14/175 patients treated with chloramphenicol and 12/177 patients treated with gatifloxacin experienced treatment failure (HR=0.86 (95% CI 0.40 to 1.86), p=0.70). The median times to fever clearance were 3.95 and 3.90 days, respectively (HR=1.06 [CI 0.86 to 1.32], p=0.59). The second RCT compared ofloxacin versus gatifloxacin and recruited 627 patients. Of the 170 patients infected with nalidixic acid resistant strains, the number of patients with treatment failure was 6/83 in the ofloxacin group and 5/87 in the gatifloxacin group (Hazard Ratio, HR=0.81, 95% CI 0.25 to 2.65; p=0.73); the median times to fever clearance were 4.7 and 3.3 days respectively (HR=1.59 [CI 1.16 to 2.18], p=0.004). I compared conventional blood culture against an electricity free culture approach. 66 of 304 patients with suspected enteric fever were positive for S. Typhi or S. Paratyphi A, 55 (85%) isolates were identified by the conventional blood culture and 60 (92%) isolates were identified by the experimental method. The percentages of positive and negative agreement for diagnosis of enteric fever were 90.9% and 96.0%, respectively. This electricity free blood culture system may have utility in resource-limited settings or potentially in disaster relief and refugee camps. I performed a literature review of RCTs of enteric fever which showed that trial design varied greatly. I was interested in the perspective of patients and what they regarded as cure. 1,481 patients were interviewed at the start of treatment, 860 (58%) reported that the resolution of fever would mean cure to them. At the completion of treatment, 877/1,448 (60.6%) reported that they felt cured when fever was completely gone. We suggest that fever clearance time is the best surrogate for clinical cure in patients with enteric fever and should be used as the primary outcome in future RCTs for the treatment of enteric fever.

O objetivo desta tese foi identificar, analisar e sintetizar evidências científicas quanto à eficácia do Tratamento Convencional (TC) e do Tratamento Restaurador Atraumático (ART) em molares decíduos considerando os parâmetros de longevidade, custo, aceitabilidade e desfechos reportados pelo paciente. Este volume apresenta um compilado de uma revisão sistemática e dois ensaios clínicos randomizados orientados pelas recomendações PRISMA, CONSORT-PRO e CHEERS. Realizamos uma revisão sistemática, cuja pesquisa bibliográfica buscou por desfechos reportados pelo paciente (PROs) em relação a tratamentos restauradores na dentição decídua em estudos prospectivos indexados no PubMed, Scopus e OpenGrey até fevereiro de 2018. Meta-análise de Comparação de Tratamento Misto foi realizada considerando os resultados dos estudos revisados. Devido à incompatibilidade de dados, apenas dor, ansiedade e a qualidade de vida relacionada à saúde bucal (QVRSB) foram analisados estatisticamente. Adicionalmente, delineamos um ensaio clínico de não inferioridade randomizado por cluster cujo desfecho primário foi a longevidade do TC e do ART em cavidadades oclusais e oclusoproximais de molares decíduos após 24 meses de acompanhamento. Como desfechos secundários, foram avaliados a aceitabilidade, representada pelo desconforto auto relatado e cooperação dos participantes, e a custo-eficácia. Crianças entre 3 e 6 anos apresentando pelo menos uma cavidade oclusal ou oclusoproximal em molares decíduos foram randomizadas entre os grupos convencional (TC) com resina composta sob isolamento absoluto após anestesia local ou o ART. Em ambos os grupos foi realizada remoção parcial de tecido cariado. O estudo foi desenvolvido em um trailer odontológico localizado no interior de uma escola municipal de Barueri/SP. Imediatamente após cada sessão restauradora, foi mensurado o desconforto auto relatado pelo participante e o comportamento pelo operador através da Escala Facial de Wong-Baker e escala de 5 pontos, respectivamente. As restaurações oclusais e oclusoproximais foram avaliadas após 6, 12, 18 e 24 meses segundo o critério de Frencken et al. 1998 e de Roeleveld et al. 2006. Os custos profissional e do procedimento, subdividido em custos variável e do material de consumo, foram considerados para estimar o custo incremental dos tratamentos. Regressão de Poisson em análise de multinível, Regressão de Cox com fragilidade compartilhada e regressão de Bootstrap foram utilizadas para testar o desconforto e cooperação, a sobrevida e o custo entre os tratamentos e outras variáveis independentes. O nível de significância foi ajustado em 5%. Tratamentos restauradores que utilizam agentes quimicomecânicos ou apenas instrumentos manuais para remoção de tecido cariado, como o ART, resultaram em menores índices de ansiedade e menor tendência em provocar dor em crianças do que tratamentos que utilizam instrumentos rotatórios e/ou anestesia. A QVRSB não foi influenciada pelos tratamentos restauradores nem diferiu entre os grupos. Por outro lado, o TC e o ART apresentaram baixa taxa de desconforto e alto índice de cooperação sem diferença estatisticamente significante entre eles. Ambos os tratamentos apresentaram sobrevida semelhante nas cavidades oclusais após 24 meses de acompanhamento, porém o custo do ART foi menor, demonstrando ser a opção mais custo-eficaz. Em relação às restaurações oclusoproximais, apesar do desempenho do TC ser superior ao ART, ele apresentou maior custo. Pode-se concluir que ansiedade e dor estão diretamente relacionados com tratamentos restauradores mais invasivos. Por outro lado, o TC e o ART apresentaram desconforto, cooperação e custo-eficácia semelhantes no tratamento de molares decíduos. Palavras-chave: Restauração dentária permanente. Dente decíduo. Longevidade. Custos e análises de custo. Medidas de resultados relatados pelo paciente. Ensaio clínico. Revisão. Odontopediatria. / The aim of this thesis was to identify, analyze and synthesize scientific evidences regarding the efficacy of conventional treatment (CT) and Atraumatic Restorative Treatment (ART) in primary molars considering the parameters of longevity, cost, acceptability and patient reported outcomes. This volume presents a compilation of a systematic review and two randomized clinical trials guided by the PRISMA, CONSORT-PRO and CHEERS recommendations. We performed a systematic review whose literature search included outcomes reported by the pediatric patient (PROs) related to restorative treatments in the primary dentition in prospective studies indexed in PubMed, Scopus and OpenGrey until February 2018. Mixed Treatment Comparison analysis was performed considering the results of the reviewed studies. Due to data incompatibility, only pain, anxiety and oral health related to quality of life (OHRQoL) were analyzed statistically. Additionally, we designed a cluster randomized non-inferiority clinical trial whose primary outcome was the longevity of occlusal and occlusoproximal ART and TC restorations in primary molars after 24 months of follow-up. As secondary outcomes, acceptability, represented by self-reported discomfort and participant cooperation, and cost-efficacy were assessed. Children between 3 and 6 years old presenting at least one occlusal or occlusoproximal cavity in primary molars were randomized between the conventional group (TC) with composite resin under rubber dam isolation after local anesthesia or ART. Partial removal of carious tissue was performed in both groups. The study was carried out in a dental trailer located inside a municipal school in Barueri/SP. Immediately after each restorative session, self-reported discomfort and participant cooperation were measure through the Wong-Baker Facial Scale and a 5-point scale, respectively. The occlusal and occlusoproximal restorations were evaluated after 6, 12, 18 and 24 months according to the criteria of Frencken et al. 1998 and Roeleveld et al. 2006. The professional and procedural costs, subdivided into variable and material of consumption\' costs, were considered to estimate treatments\' incremental cost. Poisson regression in multilevel analysis, Cox regression with shared fragility and Bootstrap regression were used to test discomfort and cooperation, survival and cost between treatments and among others independent variables. The level of significance was set at 5%. Restorative treatments using chemomechanical agents or only manual instruments, such as ART, were related to lower anxiety rates and less tendency to provoke pain in children compared to treatments using rotary instruments and/or anesthesia. OHRQoL was not influenced by restorative treatments nor differed between groups. On the other hand, CT and ART presented low rate of discomfort and a high cooperation with no statistically significant difference between them. Both treatments presented similar survival rates in occlusal restorations after 24 months of follow-up, but the ART cost was lower, proving to be the most cost-effective option. Regarding occlusoproximal restorations, although CT performance was superior to ART, it presented a higher cost. It can be concluded that anxiety and pain are directly related to more invasive restorative treatments. Differently, CT and ART have similar discomfort, cooperation and cost-efficacy in the treatment of primary molars.

The aim of this project was to investigate what information is critical to convey to nurses when performing digital triage. In addition, the project aimed to investigate how such information could be visualized. This was done through a combined user research and machine learning approach, which enabled for a more nuanced and thorough investigation compared to only making use of one of the two fields. There is sparse research investigating how digital triaging can be improved and made more efficient. Therefore, this study has contributed with new and relevant insights. Three machine learning algorithms were implemented to predict the right level of care for a patient. Out of these three, the random forest classifier proved to have the best performance with an accuracy of 69.46%, also having the shortest execution time. Evaluating the random forest classifier, the most important features were stated to be the duration and progress of the symptoms, allergies to medicine, chronic diseases and the patient's own estimation of his/her health. These factors could all be confirmed by the user research approach, indicating that the results from the approaches were aligned. The results from the user research approach also showed that the patients' own description of their symptoms was of great importance. These findings served as a basis for a number of visualization decisions, aiming to make the triage process as accurate and efficient as possible.